Postby GrouseMan » Sat May 13, 2017 9:37 am
Its been a busy couple of weeks. Tuesday the 25th of April my wife had a CT scan as part of the clinical trial she was on. It was the first CT after the baseline while on the study drug. They attempted to contact her while we were at the hospital having her ureter stent replaced. The trial is being held at another one near by. So we didn't talk to the folks monitoring for the trial until Friday, the 28th. They of course wouldn't leave a message. Anyway Thursday the surgeon doing the stent replacement found a fistula between the ureter and her colon. The purpose of the stent has been to prevent it being pinched close by a tumor growing near it. We apparently it has resulted in that fistula. The surgeon hoped that the pressure from the stint would keep it closed and prevent leakage. In the mean time Friday - the folks doing the trail, wanted my wife to come in because they thought from the CT she had a blockage. Problem was my wide was feeling pretty good, hand had bowel movements and no fever or other pain except from her back having to do with her more recently diagnosed arthritis in her lower back. So everyone calmed down. Still my wife ended up being dropped from this trial as well as they observed progression. Still over the last several weeks my wife has not been able to eat well. She complained of always filling full. (The obstruction maybe) and her belly was getting rather tight.
Well this last Thursday the 11th for the first time she work up in the early morning and threw up bile. She had not really eaten much the last few days leading up to this and her pain on Thursday was quite high. I was scheduled to take a business trip starting Sunday and not returning until very early the following Saturday, but I had visions of something really bad taking place while I was gone, so I more or less forced the issue and called her Oncologists office and his NP suggested we drive down to the hospital and come into the ER. Not the local hospital, which is part of their system but smaller, but the main one about an hour drive away, because all of her team is located down there. So we got checked in and of course at the ER they don't assume anything, chest x-rays, some CTs scans - lots of blood work, EKGs etc to rule out everything. Several doctors over the course of the day came and went, some doing cursory examinations. Kept explain that my wife didn't have any nausea but could not hold anything down eat/drink 15 mins later it would suddenly and without any notice practically come back up. Finally - they decided to admit her into the hospital on the oncology ward as soon as they had a room for her. The admitting doctor, at that point seemed to be the most informed and he explained what he knew at that point. Since she was having BM's it might be a partial blockage. Also he thought her liver was quite inflamed and there was fluid he thought near her lung causing additional pressure and might be responsible for her elevated heart rate (BP was fine). So he notified the Radiation Oncologists as he thought that they might want to see about zapping some tumors on her liver to perhaps stop them from producing this liquid and also maybe tapping this to drain it.
Well needless to say I scrambled about and canceled my trip. They admitted her and since should couldn't take any of her normal pain meds for her back they used a very low does IV morphine. That did the trick and at least she started to feel much better. Still anything she tried to drink came right back up. I came home after they got her settled in. And things went pretty well for her except Friday morning before I got there. They of course would like her to eat so they brought a liquid breakfast. Well - even little sips etc it came right back up. some one we don't know who, prescribed miralax in a big glass of water. Wife says that isn't happing. Won't do anygood at all. They also prescribed an oral steroid to I think stimulate her appetite - of course that did go well either. Before I got to the hospital on Friday - the palative care folks had reviewed her normal pain med usage, and how much morphine she was utilizing while in the hospital overnight and the morning, and started to put together a better pain management plan. Also the Internal Medicine doctor came through and talked with us - check her abdomen etc and said that he was going to have the Radiation Oncologist and Surgical team people take a look at everything.
I have to say the most through examination was given my the Radiation Oncologists NP! She check my wife over physically more than anyone else had. She was also very informative about what she and her boss thought they saw in the CT scans taken from the ER. The Radiation Oncologist came in and he stated he didn't think her pain an discomfort had anything at all to do with her liver and abdominal tumors so believed any Radiation was not going to help with anything in that regard right now. He was the first to indicate that he clearly saw that her colon was really distended, and that she was clearly blocked by a large mass. They couldn't say at that point what might be the cause of the blocking because of course my wife couldn't do oral contrast. So - they are trying to get the baseline CT scan and the CT scan done on April 25th by the clinical trial at the other hospital to compare to theirs from the ER. As they finished up the surgical resident came in who works for the surgeon that originally did her resection. The resident also was very informative and was of the opinion that it was indeed a blockage, and that that had to go. She though they could try and soften it up with laxative and get her to pass it, but given my wife can't keep anything down, well - that one was probably out. The other was putting in a gastric tube and sucking it all out and then see if she could she could pass waste with continued use of a laxative or the final option being a colostomy. Early this morning they were leaning towards the tube and sucking it out, as the surgeon thinks there are risks with doing a colostomy when there are abdominal mets. But since then they think they might have found a place where they can manage one? I don't know. Anyway - if we can get weight back on her there is no reason she shouldn't be able to be eligible perhaps for another clinical trial if we can find one for her. Maybe while they do the colostomy they can get a sample to biopsy the mets that would give us better information about them for possible exploitation. Her other genetic testing was done on her primary which as we know is nothing at all like the mets.
Well - That's about it. Sounds like my wife after nearly 4 years is going to end up with a colostomy. I need to get out of here and over to the hospital.
GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017